Advocating for Your Health
- Mollie Mulheron, 24, was struggling to swallow and breathe, but doctors told her she was simply “too stressed.” An ER visit led to a lymphoma diagnosis.
- Lymphoma may or may not present with warning signs. Early symptoms of the disease can include swelling of lymph nodes in your neck, armpits or groin, persistent fatigue, fever, night sweats, shortness of breath, unexplained weight loss and itchy skin.
- Sadly, Mulheron’s story is not the first of its kind as many women have felt dismissed by doctors. That’s why being your own advocate can be a key to getting a correct diagnosis and obtaining the best treatment possible.
- One cancer survivor told SurvivorNet reader to ask many questions so doctors “earn that copay.” And one of our cancer experts says everyone should educate themselves and be their own health care advocate.
Mulheron, 24, almost drowned while snorkeling in the Galapagos Islands because she was struggling to breathe. She also had trouble swallowing, but doctors said her issues were “in her head” and she was simply “too stressed.”
Read MoreA follow-up biopsy confirmed the tumor was, indeed, cancerous.
“They couldn’t start treatment until they knew exactly what it was so I was waiting for the biopsy to come back,” Mulheron said. “When I finally got the results, it wasn’t what we hoped for – it’s non-Hodgkin lymphoma which is rare and aggressive.”
Non-Hodgkin lymphoma is a cancer of a type of white blood cell called lymphocytes, which are part of the immune system.
“The doctors seem hopeful they can treat it and say the success rate for the type of cancer I have is good and it looks hopeful… The only sad thing is that it’s stage four which means it’s on both sides of my chest and has spread to other parts of my body,” Mulheron said.
Mulheron is currently waiting to hear how much her cancer has spread, but it’s still hard to her wrap her head around the devastating diagnosis.
“That was the worst news of my life, I can’t even explain how it felt now,” she said. “I knew something was wrong, but I didn’t think it was that wrong.”
Once she knew her specific type of cancer, it was time for treatment. She had a bad reaction to her first chemotherapy treatment, but she’s doing better now.
“The doctors said it was because they started it too fast, and after that it was okay, I just had a few side effects like headaches,” she explained. “The doctors say there are a lot of treatments they can try because I’m young, fit and healthy.”
Understanding Lymphoma
Lymphoma is a type of blood cancer. Blood cancers can affect the bone marrow, blood cells, lymph nodes and other parts of the lymphatic system. Every 3 minutes, one person in the U.S. is diagnosed with a blood cancer, according to the Leukemia & Lymphoma Society.
Lymphomas begin when the white blood cells called lymphocytes develop a genetic mutation that makes them multiply much faster than normal. This, in turn, forces older cells that would normally die to stay alive. Then, the quickly multiplying lymphocytes build up in your lymph nodes – the small glands in your neck, armpits and other parts of your body.
What Kind of Lymphoma Do You Have? Why Your Type Matters
Knowing what type of lymphoma you have is important since there are more than 40 different varieties. Hodgkin lymphoma and non-Hodgkin lymphoma are the main two sub-categories with the latter being more common.
Lymphomas are distinguished as Hodgkin or non-Hodgkin lymphoma based on the presence of the Reed-Sternberg cell — a giant cell derived from B lymphocytes. If doctors cannot detect this cell, then the cancer is a non-Hodgkin lymphoma.
The American Cancer Society estimates that about 8,830 new cases (4,850 in males and 3,980 in females) of Hodgkin lymphoma and about 80,550 new cases (44,880 males and 35,670 females) of non-Hodgkin lymphoma will be diagnosed in the United States for 2023.
You lymphoma risk may be higher if you:
- Have been infected with the human papillomavirus or Epstein-Barr virus
- Had an organ transplant
- Have a family history of lymphoma
- Have been treated with radiation or chemotherapy drugs for cancer in the past
- Have an autoimmune disease
Know the Signs of Lymphoma
Lymphomas often creep in quietly, without symptoms. Even when signs of the disease do show up, they don’t necessarily point directly to cancer.
Dr. Elise Chong, a medical oncologist at Penn Medicine, previously explained to SurvivorNet that lymphoma symptoms could be difficult to detect.
Sneaky Lymphoma Symptoms Often Lead to a Late Diagnosis
“The symptoms of lymphoma, especially if you have a low-grade lymphoma, often are no symptoms,” Dr. Chong explained. “People say, but I feel completely fine, and that’s very normal.”
Some possible signs of lymphoma include:
- Painless swelling of lymph nodes in your neck, armpits or groin
- Persistent fatigue
- Fever
- Night sweats
- Shortness of breath
- Unexplained weight loss
- Itchy skin
Overall, it’s crucial to communicate anything unusual happening to your body with your doctor. Even if you think there’s nothing to worry about, it’s good to rule out the possibility of more serious issues.
Advocating for Your Health As A Woman
Mollie Mulheron tried to shared her concerns with doctors. But, sadly, it took an emergency trip to the hospital for doctors to take her symptoms seriously.
Unfortunately, we’ve heard many women talk about not feeling heard when it comes to their healthcare. That’s why so many of them stress the importance of advocating for your health.
One such woman is April Knowles. In a previous interview with SurvivorNet, she explained her journey to becoming a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. She was eventually diagnosed with metastatic breast cancer at age 39.
I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer
“I wanted my doctor to like me,” she said. “I think women, especially young women, are really used to being dismissed by their doctors.”
The whole experience taught her how important it is to listen to her body and speak up when something doesn’t feel right.
In a similar vein, Jenny Saldana was routinely dismissed before her breast cancer diagnosis. She says she was told, “you can’t keep coming back here taking up resources for women that really need them.”
“The squeaky wheel gets the oil,” she added as advice for others.
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Colon cancer survivor Evelyn Reyes-Beato has also previously spoken to SurvivorNet about self advocacy in healthcare. She urges people to “get knowledge” so they won’t feel intimated by their doctors and ask questions to make physicians “earn that copay.”
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, says healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” he previously told SurvivorNet.
Dr. Murrell says not every patient will “fit into” the mold, so it’s important to “educate yourself and be your own health care advocate.”
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Murrell said. “And I think that that’s totally fair. And me as a health professional – that’s what I do for all of my patients.”
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